December 3, 2014

I ought to have majored in home economics. Not that there was any such thing by the mid-1980's when I was a university student. What self-respecting young, urban woman growing up in the age of bringing home the bacon would opt for classes in frying it up in a pan? Not I, surely.

I grew up believing my self-actualization depended on a professional career. My talent as a student prompted the frequent query, "Are you going to go to medical school?" notwithstanding my aversions to bodily fluids, hospitals, and science classes. A lawyer, maybe? Given my affection for school, I declared I would be a teacher and got an English degree as a down-payment on my future.

But what I really wanted to be, always wanted to be, was a homemaker. I am an old-fashioned soul and I aspired to an old-fashioned life. I wanted to be a wife and a mother more than anything else. My true disposition was obvious not least in the bent of my girlhood play -- baby dolls, tea sets, Mother's Helper, and Mystery Date.

In time I married my mystery date, replaced my baby dolls with babies, and became the mother in need of some help. Nothing in my education had prepared me for my vocation.

My own mother was a model housekeeper, her skills the bitter fruit of a neglected childhood governed by two blue collar parents who spent long hours at work and left the upkeep of the home to their competent only child. My mother knew how to do everything, and the way she did everything was the right and only way to do it. She didn't delegate.

My mother's house, even in her days as a divorcee raising three little girls and working full-time, was neat as a pin and clean as a whistle. No one ever wanted for fresh underwear or a warm meal. Order was a given. I, meanwhile, left for college never having washed a load of laundry in spite of being the oldest daughter and a latch-key kid from the age of ten.

As a new wife I knew the standard, but I had no idea how to achieve it. I was born with less than a full measure of my mother's tireless discipline. I recognized early in my married life that I could neglect the weekly cleaning I had assigned to myself and nothing happened. Yes, the mess continued to accumulate, but the authorities did not come to my house to inspect and find me unworthy. This was a problem.

My housekeeping style developed into a pattern of obsessive fits and failed starts. Not unlike my other attempts at establishing self-discipline -- around eating and exercise, for instance -- my efforts at keeping a clean and tidy house were characterized by enthusiastic bursts of perfectionistic excess which flamed out into the ashes of martyred defeat. No one was impressed with my sparkling toilet bowls or homemade vegetarian goulash. If I wanted accolades, I realized, I should have gone to medical school.

I had not learned to appreciate work for its own sake.

I'm naturally inclined to sloth. If it looks like work, I tend to avoid it. On this basis, I had clearly chosen the wrong career. My education lacked as much in inculcating the value of hard and thankless labor as it did in cooking, cleaning, and sewing instruction.

I would like to say that the recent accumulation of dirt in my house is the result of my four months of incapacitation. That would not be true. Rather, I had allowed a not-insignificant layer of grime and clutter to take hold while I was fully able-bodied.

It is also true that when I reclaimed my kitchen, I saw that I am a better housekeeper than I had realized. There are many little things I do in tandem with cooking and dish washing that had not been done. At all. In a long time. I was simultaneously horrified and gratified. My kitchen still needed me.

Working around the house has taken on a new luster. Sitting immobilized in a chair watching others do one's work focuses one's attention. I wanted to clean my own bathrooms. I longed to chop a carrot or wash my own dishes.

Yesterday, for the first time in months, I cleaned my own shower. I am able once again to get on my hands and knees and get back up as many times as I want. My shower is clean. I dusted and moved clutter from place to place and swept and whatnot for several hours. A little voice inside of me said what I have been reluctant to concede, You like this.

I do?You do.
This little truth had sneaked in when I wasn't looking. Hard work is satisfying, dare I say fun? There's not a lot to think about, so I can pray or allow my mind to wander or tune in to endless Fresh Air podcasts through the Bluetooth. I'm doing my duty in accord with my vocation; washing a dish or sweeping a floor is always in keeping with God's will for me. True, the work is never done, and that does rile my perfectionism, but if I can accept the inherent pleasure in it, its undoneness can become a feature.

The next time I face a task that looks like work, I expect that the spirit of avoidance will loom before me. I know its voice: You don't want to do that. It's going to take forever. You're too smart to be doing something so menial. But I plan to roll up my sleeves, queue up Terry Gross, and remember that this work is God's Yes to my girlhood prayers.

November 29, 2014

As the sun went down today, the season of Advent began. An hour before I went to confession. I admit to an almost superstitious desire to start the new church year with an unsullied soul. I want a clean slate on which to write new stories. Yesterday's news is always at least a little bit bad.

Daily I can examine my conscience, and daily I will encounter my own sin. What I recount in the presence of God is distressingly familiar. It's the same old song, and its tune is guilt. Why did I eat that? I want what she has. How much time did I waste?
It's unfashionable to believe in sin. Sin and judgment are relegated to the reliquary of the past. Patriarchy and hierarchy and thearchy have kept us down. Freedom means doing as I like as long as everybody consents and nobody gets hurt.

Unfortunately my own soul isn't sure she consents. What I want or don't want isn't clear. I want to lay on the couch scrolling through Facebook, and I want my basement cleaned. I want money to pay my kids' college tuition and to feed the poor, and I want another $5 latte.

If I'm not careful, before I am fully aware, it is not a day but a week and a month and a year and a season and a lifetime and where am I? Sliding into a crevasse of my own making.Those daily sins, the drip, drip, drip of envy and covetousness, of sloth and gluttony, start to wear ruts and gullies in the solid rock of my good intentions.

I sure don't feel free.

So I slink back to the confessional, not as often as feel I ought to, because in 47 years I've still only availed myself of this sacrament a couple of handfuls of times. I feel awkward. I'm not sure what to say. Is it enough? Is it too much? I am uncomfortably self-conscious as I confess my self-absorption. But I still go, because I want to feel free.

My eleven year old joined me in the confessional queue today. He said afterwards, "Mom, when I'm done with confession, I can't stop smiling." He's happy, because he's free.

I am, perhaps, too aware that before the day is over, I will have sinned again in some of those same old ways. I will speak before I think. I will open a catalog and want things I do not have and do not need. I will let a dirty bathroom sit unattended while I watch Netflix. But in those precious moments as I exit the little room with the kneeler and the chair and the lamp and walk into the sanctuary to pray three Our Father's for those who have fallen away from the faith I can't stop smiling, because I am free.

October 10, 2014

Why does life have to feel like a handful of sand, something so hard to hold onto, always slipping through my fingers. Another day gone.

A week ago tomorrow a young man who graduated high school with my daughter last year was killed in a hiking accident. Nineteen years, now a life story is complete. He was charming, talented, well-loved. I barely knew him, but I am not ready for his story to be over.

Or mine. Are we ever? When I was sick and could better imagine my own death, I was as peaceful as you please. That was a great surprise to me. I sat and sat and I never felt worried or scared. I could imagine a world without me and I knew all would be well. Yet this world without this young man, so recently vibrant with life, now dead -- I am struggling to imagine the world without him. Mostly I saw this young man on stage. He was a scene-stealer, funny, unforgettable. The memories aren't enough. I want more.

Years and years ago a dear friend's father died from AIDS. She said, after he died, "I can't imagine a world without my father in it." When, half a decade on, my mother died, I knew what she meant. When my mother was sick I would lie in bed and make-believe that she was sitting on her couch watching T.V. instead of lying in a hospital bed. It helped, even though it was a flagrant denial of reality.

I want to be able both to face reality and get through the day without crawling back under the covers or eating myself sick. How is that possible on a day when we gather to mourn the death of a nineteen year old?

The kids who knew him have organized a vigil at a neighborhood park. They want balloons and music and turquoise and mint-green and rhinestones. They want to celebrate life. I have to go. I need their hope. I want my 11 year old to see how a community can come together in the face of tragedy and sorrow and weep and mourn and hope. I want to see it myself. This grief is isolating. It needs the balm of company.

I have tried to find comfort in acknowledging how many, many communities have buried their nineteen year old sons, their lives surrendered to violence or sickness or ill fate. But it is exactly the particularity of knowing this One that makes the loss so heart-rending. This face, this voice, the expectations that attached to this life.

And so, as all roads of truth do, this one leads inexorably back to love. I knew this young man just enough to love him. I know many people who knew him better and loved him better. Heartbreak is the price we pay for loving, and the price is steep.

What else can we do? Stop loving? No. We might as well stop living. That is, I think, the choice. Choose death or life. To choose life we have to keep loving and risk all the suffering that is bound to attend the love. Does Brittany Maynard really want to die, or are she and her family just so afraid of all the suffering that comes with loving even as she's dying?

The truth is we're all loving and suffering and dying all the time, every day. We can choose to pick a date and find a doctor to prescribe a pill and make an end of it. But we may very well miss the balloons and the music and the rhinestones.

[Note: If you have not read this piece by Kara Tippetts, do. She is a 36 year old mother of four from Colorado Springs who is dying of cancer. Her blog is a heartbreaking account of what it looks like to live -- and die -- with great love.]

October 1, 2014

Note: I shared the following thoughts when asked to give a spiritual teaching to a group of women in the women's ministry within which I serve. A friend wanted to see them here on the blog, so here they are.

“We are afflicted in every way, but not
constrained; perplexed, but not driven to despair;persecuted, but not abandoned;
struck down, but not destroyed;always
carrying about in the body the dying of Jesus, so that the life of Jesus may
also be manifested in our body.” – 2 Corinthians 4:8-10

I was afflicted with symptoms,
first pain, for months, yielding no diagnosis in spite of visits to specialists
and more blood tests than I can count, all of which were normal.

I was perplexed. What is wrong with me?What is God doing? But more than
anything I wondered, Who is this God? Who
am I? Nothing that I knew, or thought I knew, of God or of myself was
adequate to help me understand what was happening to me.

I was persecuted by symptoms and
by tests and by doctors who all but dismissed me – How about an anti-depressant? one offered. I was persecuted by my
own feverish imagination and by my relentless Google-searching of symptoms and
possible diagnoses.

Finally, I was struck down. What
had started on November 5th of last year as pain in my hands had, by
the middle of April, evolved into pervasive weakness. I could not drive or even
get in or out of a car without help. I could not rise from a chair or climb
stairs. I was walking with the aid of a walker. I could not lift my arms, not
at the elbow and certainly not at the shoulder. I could not get in or out of
bed or dress myself or shower alone or use the toilet without help. I could not
raise a spoon to my own mouth or swallow solid food.

I carried in my body the dying of
Jesus.

I wish I could explain to you
what happened then, but I can’t explain it. I don’t understand it.

I could not move my body,
literally, could not move my limbs, but I was not constrained. In fact, I felt
free in a way I have never felt, even as other people drove me and dressed me
and washed me and fed me.

I was not driven to despair even
as I was completely mystified about what God was doing in my life. I did not
feel like giving up. I felt fully possessed of my own life. I was at peace.

I was far from abandoned. My
husband washed my hair. My daughter dressed me and decorated my walker with
ribbons. My family were provided meals for weeks into months. People came. They
drove me to appointments. They swept my floors and scoured my bathrooms. They
sent cards and brought flowers and sat on my couch. I was overcome with
gratitude for the love that was being poured out on me, me.

I was not destroyed – and not
because I finally got a diagnosis and medication. Not because I’m getting better.
I was not destroyed even when I didn’t know if I would get better. I had
arrived at a deep and inexplicable joy.

At the point, when I was most
disabled, I knew, for the first time in my life, that I could live or I could
die and all would be well. All would be well with me and with my family and
with the world. I was able to embrace my death, so I was able to embrace my
life. I know that the death I carry in my body is the dying of Jesus. My life
must be the life, the resurrection life
of Jesus. Whether I got better or not, I could be a sign of hope.

These questions are for every one
of us:

When have you been afflicted, but not
constrained?

In what ways have you been perplexed, but not
driven to despair?

When have you felt persecuted, but known you had
not been abandoned?

How have you been struck down, but not
destroyed?

How do you carry in your body the dying of
Jesus? How is the life of Jesus manifested in your body?

June 26, 2014

"For our sake he made him to be sin who did not know sin, so that we might become the righteousness of God in him." - 2 Corinthians 5:21

I awoke this morning still praying that I might learn to look on the face of God revealed in his suffering servant without revulsion, and I started thinking about sin. Paul says, "the wages of sin is death" (Romans 6:23), and I think that there is something in that to which we, I, can acquiesce. It satisfies my sense of justice.

This is the way I expect things to work. The guilty are punished; the innocent go free. I like this calculation so much that I regularly run it in reverse -- if there is punishment, there must be guilt. "Rabbi, who sinned, this man or his parents, that he was born blind?" (John 9:2).

When I see the ugliness of suffering, I want someone to blame. I want a reason and I want it to seem fair to me. I want the punishment to fit some crime. If it does -- cause and effect -- I know how to control it. I don't commit that crime, and I avoid that punishment. I'm innocent. I won't suffer.

Only it doesn't work that way. People who never smoke get lung cancer. Faithful, diligent parents have children who go astray. Runners have heart attacks. And so on.

These simple facts remain somehow unconvincing. I continue to order my life around the calculus of control. I tiptoe. I manipulate. I lie to myself. Anything, anything to maintain an illusion of my own innocence so that I can be spared the suffering I so fear. I want to game the system. I want there to be punishment for crime, as long as it's not my crime and my punishment.

It's a story as old as humanity. The first five books of the Bible detail how the ancient Hebrews, as all ancient peoples, developed an elaborate system of expiation. They knew that things weren't right. People did things that led to suffering, their own and others'. And it wasn't just individual. The community might rise or fall. Food might become scarce. Other tribes might invade. Once we were slaves in Egypt. They needed a calculus of control.

Blood sacrifice was the norm for the ancients. Take a lamb or a goat, unblemished, that is, innocent. Spill it's blood. Give its life in atonement, an exchange, innocence for guilt. Lay on the innocent one the guilt of the many. Life offered unto death.

Then in the sixteenth chapter of Leviticus, we also get this, the scapegoat:

"Laying both hands on its head, he shall confess over it all the iniquities of the Israelites and their trespasses, including all their sins, and so put them on the goat's head. He shall then have it led into the wilderness by an attendant. The goat will carry off all their iniquities to an isolated region." (21-22)

That's right. Take the sin and the suffering away where I cannot see it.

This is what I say I want, until I remember that I want the truth, and this picture is simply not true.

When I first started to get sick, I had moments when I wondered what I'd done. Maybe this was me receiving wages due. I didn't eat right or exercise enough, and now I was going to pay for that with the degeneration of my body. That seemed sad, but fair somehow.

I have likewise looked back on the progress of my illness and its diagnosis and wondered what I could have done but didn't do. It was months between the first time someone offered me a referral to a neurologist and my first appointment with one. The neurologist is the doctor who diagnosed me. Why didn't I go sooner? The answer is that I didn't want my problem to be neurological (it's not), and I was engaging in the magical thinking that if I didn't go to a neurologist, it wouldn't be. In the meantime, I continued to get worse. How much disability might I have avoided? How much trouble might I have saved the small army of people who have been taking care of me?

Do you see? I still want to tally it all up on a tidy balance sheet with sin on one side and consequences on the other.

It is so difficult to look on the face of God's suffering servant without turning away in revulsion, because to look on him we have to embrace the dissonance of suffering innocence. And once we see it in him, we start to see it everywhere.

Jesus is the scapegoat in the wilderness, but he is also the hideous public display of suffering innocence. Crucifixions were meant to be seen in all their horror. They were a warning to any who would threaten the order, the balance sheet. Break the rules, suffer the punishment. Except this One didn't break the rules and suffered the punishment just the same.

So it is. It is not only the guilty who suffer, but the innocent, and it is terrible to look upon suffering innocence. I cannot control it, so I want to hate and reject it. But this only serves to put me in league with the forces of death. I heap onto suffering innocence more suffering when I accuse and blame.

I have to learn to do otherwise. This is something only God can teach me. Only God can teach me to embrace with open hands and open heart suffering innocence. It is beyond what my unassisted humanity can do. It is the work not of flesh but of Spirit. I have to learn to love.

June 25, 2014

"...men turn away in revulsion from the face of God revealed in his suffering servant." - Ruth Burrows, OCD, in To Believe in Jesus

I had a hard time moving past that sentence. Revulsion is a strong word.

I discovered Ruth Burrows a couple of weeks ago when I happened upon this blog post. I felt surprised that I had never heard of her before. I did, after all, just complete a two year program studying prayer and spiritual direction. But it didn't feel accidental that I should encounter her now. I was compelled and ordered two of her books.

They are slim volumes. I am reading this first one slowly, one short chapter at a time. I can see why I hadn't stumbled on Ruth Burrows before. Ruth Burrows takes Jesus very seriously.

Her first point in To Believe in Jesus is that most of us don't. She's not talking about the average person. She's talking about the professing Christian. She unapologetically and frankly states that belief in Jesus crucified as the revelation of God's own face is something that most of us are unwilling or unable to accept.

I like to think I take Jesus very seriously. I want to take Jesus very seriously. I want to believe I love the face of God revealed in his suffering servant. I want to think of myself as one of the women at the foot of the cross, not revolted by the blood and the nakedness and the agony. At the same time, I have matured enough to recognize that I am not so above-average as I'd like to think I am, so I had to stop and consider that sentence and wonder how it is true of me. How do I turn away in revulsion from the face of God revealed in his suffering servant?

I sat and thought about other people I have known in their suffering. I thought about people and situations that I have not turned away from. I could have stopped there and felt smug, but, this time, I didn't.

How willing am I, really, to watch, to remain, to love what is revolting? For instance. I have this sympathy card sitting in my desk. I bought it many months ago. I bought it for a woman in my wider circle, an acquaintance, someone I know but not terribly well. Her young adult child died suddenly. I bought the card because I'm that kind of person, I told myself, someone who could face that sort of suffering with love. I had a prior commitment on the day of the memorial service, so I hadn't planned to go. But then my prior commitment was cancelled, and I still didn't go. And I never sent the card.

I turned away in revulsion from the face of God in his suffering servant.

Here's where else I turn away -- when I see that face, gaunt held up by a neck whose muscles were too weak to keep it straight, sitting on wasted shoulders, in the mirror. I claim to be willing to put on Christ, to be the healing hands and feet of Jesus for God's kingdom. I claim that I am willing to suffer to serve. But I realize I am not willing to be the face of the suffering servant. That fills me with revulsion.

What I see in that face is need, and I don't want to be needy. I have a deep unwillingness to reveal to the world the face that needs to have the blood and tears and sweat wiped away. I am unwilling to see in myself the weakness, the frailty, or the vulnerability. I look away in revulsion.

Isaiah 53:2-3 says,

He grew up like a sapling before him,
like a shoot from the parched earth;
He had no majestic bearing to catch our eye,
no beauty to draw us to him.

He was spurned and avoided by men,
a man of suffering, knowing pain,
Like one from whom you turn your face,
spurned, and we held him in no esteem.

It's time, at least for me, to get honest about this Jesus I claim to love, whose life I claim to want to allow to be lived through me. It's time to learn to love the unlovable, what is ugly and broken and dirty, even grotesque -- and not by pretending that it's not. It's not about putting over the ugliness a lovely shroud of holiness and thereby declaring what is revolting to be beautiful. That's not Christianity, it's Orwell or Huxley.
To look with love on the revolting face of the Crucified is something God, and only God, can teach me how to do. I'm starting by looking in the mirror.

June 19, 2014

I want to know Christ and the power of his resurrection and the sharing of his sufferings by becoming like him in his death, if somehow I may attain the resurrection from the dead. Not that I have already obtained this or have already reached the goal; but I press on to make it my own, because Christ Jesus has made me his own. Beloved, I do not consider that I have made it my own; but this one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the heavenly call of God in Christ Jesus.

- Philippians 3:10-14

"Forgetting what lies behind..." I endeavor to do that, to forget what lies behind. Most days I succeed. Some days I don't.

As someone on the spiritual path, I have heard endlessly about the so-called power of now. Remain in the present moment. That's the wise admonition. Just be. I'm not denying the truth of it, but I have to confess that on the inside, whenever I hear it, I do some serious eye rolling. Yeah, yeah. But some of us live in the real world where there are kids and dirty dishes and ringing telephones and endless tasks and distractions.

Except now I can't drive the kids or wash the dishes or jump up to grab the phone. I'm doing a lot of being. Too much.

When I forget to forget what lies behind, the able-bodied me, I want to do more doing. I think about what I used to do, and I want not only to do it, but to go back to taking the doing for granted. Who thinks about hopping out of bed or tying her own shoes or being able to reach the light switch or the kitchen faucet? We just do it. Did it.

I get tempted to live in the not-so-distant past that seemed so permanent. The last time I needed help washing my hair, dressing myself, getting myself a meal, I was a preschooler. That was a long time ago.

The intervening years were all present, day after day of practice until those tasks and so many others became invisible to my awareness. They were not the background, but the very fabric of my days. Get up, go, do. Repeat.

What would it mean or matter to bring my attention to them? In rush the Wise Spiritual Teachers to tell me to taste each bite or pause to feel the water on my skin or smell the proverbial flowers. Become present to the present. It seemed to eye-rolling me like an exercise in either navel-gazing or futility. And maybe it was.

But now the now is all about being and noticing, whether I like it or not. No more taking for granted, because everything, everything requires an effort, an act of will. Get up from the chair? Where's the walker? Are my feet in the right spot? Have I sat somewhere I can expect to rise from on my own? I am painfully aware of what it takes to get up from a chair. Hips too weak. Quads and forearms just strong enough to compensate from the right upright chair.

It's not all that interesting, and the days are filled with these moments. What can I do? What do I need help with? I carried the cushion and the pillow today from the upright chair at the dining table to the upright chair in the living room next to the computer. It took two trips and ten minutes. And lots and lots of attention to how I might hold the pillow, carry it while I dragged the walker, prop it up on the chair. I did that. But I could not find a way to reach the bathroom cabinet to open it to reach for the toothpaste. Not today.

I claim I want resurrection. I say I want to be like Paul, knowing "Christ and the power of his resurrection." But I am avoiding the fine print, the "sharing of his sufferings by becoming like him in his death." Why does something always have to die?

I've thought a good deal about how God says (for instance, in the Beatitudes) that in order to get the good stuff He wants to give us, we have to need it. The hungry get fed. The mournful get comforted. The need then its fulfillment. Resurrection doesn't even make sense if I'm not dead.

I don't like having needs. I liked taking for granted that I could take care of myself, thank you very much. I liked sleepwalking through the busyness of days and doing and feeling a little smug and Spiritual when I chose to pause to pay attention and Be.

Now I can't not pay attention. Every thing I do is a "straining forward to what lies ahead," to the day when I can get that toothpaste out of the cabinet. Or not, because I don't really know what lies ahead, not in practical terms. Thinking I do is just another variation on looking behind. That's what was. I don't know, can't know what will be.

I only know what is. I can know or figure out what I can do -- move the pillow, get out of the chair -- today.

June 10, 2014

As I have received, with gratitude, readers' feedback from yesterday's post, I get the sense that I have left a partially wrong impression. I stand firm by the idea that God doesn't strictly need me. But that's not the whole story.

In 2 Corinthians 4:7, Paul memorably says, "But we hold this treasure in earthen vessels, that the surprising power may be of God and not from us." Sometimes "earthen vessels" is translated as "clay pots." What could have been more commonplace in Paul's day? In my house I might say, "I hold this treasure in a plastic cup."

Imagine that with me. I have a cabinet full of plastic cups. Many we got for free at this or that restaurant when the kids were little. Their outsides are faded from too many trips through the dishwasher. Their rims are cracked and a little melted. They're the cups I send outside. If one doesn't make it back in, it's all the same to me. We got them more or less for free. In a way, they're worthless.

"We hold this treasure..." I'm not inclined to put a treasure in a plastic cup, and Paul might not have been inclined to store treasure in a clay pot. But somehow, God is so inclined.

He takes me, and you. Here's what he's got to work with: "We are afflicted in every way, but not constrained; perplexed, but not driven to despair; persecuted, but not abandoned; struck down but not destroyed: always carrying about in the body the dying of Jesus, so that the life of Jesus may also be manifested in our body" (2 Corinthians 4:8-10).

This is not Paul at his most transparent, maybe, but we can untangle it. We're afflicted and perplexed and persecuted and struck down and carrying about, well, death. If I were choosing a vessel in which to hold a treasure, I would choose something a bit more attractive. No melted edges for me. I'd use crystal, or glass, at least.

But because I'm faded and overused, I am also not constrained....not driven to despair...not abandoned...not destroyed. I've got nowhere to go but up. I don't break easily. I flex.

For as long as I last -- and I'm not going to last in this body forever -- I can still be filled up. The life of Jesus can still be poured into the little plastic cup that is me.

What I knew on Sunday at church is that if I show up just as myself, I show up empty. I'm the cup. It's only when the life of Jesus is poured into me that I've got something to give. It's not me, but it is me too. God could use a golden chalice. But he uses me, the plastic cup, "that the surprising power may be of God and not from us," from me.

And it is surprising, isn't it? I have never picked up one of my ugly plastic cups, put it to my lips, and found it filled with fine wine. I wouldn't expect to. But maybe I should.

God takes me, and you, just as we are -- faded, afflicted, cracked, perplexed, melted, and He offers to pour into us the finest wine, not for us to drink, but for us to offer as libation for a thirsty world.

I have to ask, and you do too, what it takes for us to let Him fill us up. If I want to fill my own plastic cup, it has to be upright, held still. Or what I want to pour into it will simply spill out onto the floor, as if the pouring had never happened at all.

I have to contain what God wants to pour into me. That is my job, me, the plastic cup. I give the wine of God a form, a shape. God's own Spirit can then be carried around and offered as drink to someone in this world of thirst. God could do it another way, but He doesn't. We hold these treasures in plastic cups.

June 9, 2014

Not all days are good days. Sometimes I sit here feeling helpless and useless. Sometimes I want to eat or need to go to the bathroom and all of my helpers also need to do whatever it is they are doing, and I have to wait. And I try to wait patiently, and sometimes I feel impatient instead.

That's when the thinking starts to take over. I think I should be able to get myself in and out of the bathroom or fix my own snack. I remember that this isn't how it has always been even though it is how it is now. I remember, and I think I'm supposed to be able to take care of my own damned self. Dress myself. Feed myself without dropping food down my front (draped with a dishtowel) or onto the floor. I remember that the old me, regular me, could get in and out of a car -- and drive it -- and roll over in bed and walk uphill and cook and shop and... You get the idea. I get mad.

Sometimes I'm angry about what I can't do for myself and even more angry about what I can't do for anybody else. I have a sister-in-law with a new baby, and I can't help her. Some people I love very much have had some significant losses, and I can't help them, not even with a visit or a meal or a hug.

When I was in college I knew a woman who was planning to finish her education and join a Carmelite monastery. Carmelite nuns are cloistered, which means that they take a vow of silence along with their vows of obedience and poverty and chastity, and their lives are dedicated to prayer and to work, in that order. When I was 20 I could not even conceive of such a life, but I didn't question the value of a community of women whose primary vocation was prayer. God knows the world needs prayer.

Now, here I sit, in my little cloister. I don't do much. I do my physical therapy exercises, walking up and down my hallway, playing with silly putty, standing at attention to strengthen my neck. I can type, obviously, but, between predinsone-induced brain fog and fatigue, there are days when my thinking is pretty fuzzy and serious reading or writing is a struggle. But I can pray. I guess.

I want it to feel like enough. I have taken very seriously the need for me to pray for others in this season, these others, especially, who have been so faithful in praying for me and in doing all the things my body won't do. So I turn to God, or I try to, and sometimes it feels like prayer, and sometimes it feels empty and I feel helpless and useless.

That's when the thinking starts. What is prayer supposed to feel like? Something? Sometimes it just feels like thinking -- thinking about other people's troubles or losses or celebrations or struggles. Is that prayer? Sometimes instead of remembering, I forget. I forget that I said I'd pray for her or him or this or that, and then I talk to you and you remind me and I feel guilty, because I'm just sitting here. Can't I at least pray?

Sometimes I get mad at all the lousy stuff that happens to other people. Why is she in so much pain? Why did they have to suffer this loss? Why, why, why? Then I'm facing a God I'm not sure how to pray to anyway.

Sometimes I tell myself that it's enough for me to gather up all these needs, the ones I remember and the ones I've forgotten but that God still remembers. I gather them up, like piling odds and ends into an old rag for a knapsack and tie the four corners in square knots and hold them or fling them toward the light, toward God. I don't know what else to do or how else to do it, and it most definitely does not feel like enough or, sometimes, like anything at all.

Saturday night was one of the sometimes when the thinking starts. This time was a consequence of everything feeling a little too normal -- sitting on the couch, watching a movie -- but with the little wrinkles around the edges of the smooth surface -- the near-impossibility of raising my hand to my mouth to get a piece of popcorn in, the turtle-on-my-back helplessness when it's time to get off the couch. I went to bed cranky and woke up cranky and took it all, my own odds and ends, to church and sat with them and wondered what God was going to do with All That. And I listened.

It's the truth, of course. "Where were you when I founded the earth?" God asks Job (38:4). And me.

That's not to say that I don't think God has work for me to do. Important work. Kingdom work. I believe God has me -- and you -- alive today for a reason. God's reason.

As I sat there in the pew, I stopped trying to pray for everybody else and noticed what was happening inside of me, and I realized I was empty. I wanted to give, but I didn't have anything to give. I was forced to allow it to become my story, my need, to ask God to fill me up and notice what I needed to be filled with. I'm not all that happy about the answer.

I want, so badly to feel useful and helpful. I want to have capacity, to be filled with the blazing fire of the Spirit which was the theme of the Pentecost celebration. The limp rag of truth is that I was tired, and I needed sleep. No tongues of fire or speaking in foreign languages or roaring wind. I needed an early bedtime. How quaint.

As I lay in bed last night, I kept returning to what I now knew, to the awareness that laying there, trying to sleep, was my way of allowing God to fill me up. Sleeping was a way of saying yes to God. A way of praying. This is my vowed life in the cloister, the poverty of disability, the chastity and silence of my solitude at 3:30 a.m., the obedience of turning my attention to God even when, especially when, that feels just exactly the same as doing nothing.

June 2, 2014

I had a phone call last week to set up my first appointment with a new spiritual director. We're already well acquainted; she taught the second year of my spiritual direction formation class. She knows all about what's been happening to me since I've been ill.

Near the end of our phone call she suggested that I have been courageous and inspirational in her view and in others'. Some readers/friends have said the same. Those two words: Courageous. Inspirational.

I told her in all sincerity that I did not have the slightest idea what she was talking about.

And I didn't.

It looks different from the outside. That I know. I've been on the outside so many times. I've watched other people suffer -- undergo chemotherapy, divorce, bury a spouse or a child. I have had the thought. He's so inspiring. She's so brave. Strong. Faithful

But what did I know? All those things and more may well have been true of the people to whom I ascribed them. Still, I suspect that I was also engaging in projection. What I was projecting into his grief and her cancer and their broken marriage was my own fear.

I didn't want to be them. I believed I couldn't survive it. As I looked at this or that person who was surviving, I felt like they had to be endowed with something I didn't have, a superpower for overcoming adversity. Now, I know for a fact that I possess nothing of the sort, so I hesitate when someone calls me brave. But I've still been projecting, because I don't know what someone else is thinking or feeling when they call me brave. I may have done or said something of that sort from my fear, but that doesn't mean you're afraid.

I took the question with me when I went to meet with my director. She is very wise and discerning, and I wanted to know what God might be saying to me about these foreign-sounding words, courageous, inspiring.

Here's what I knew before I walked through the door for my appointment: I knew that, for the most part, my seeming courage wasn't virtue, because it wasn't a choice. I simply haven't felt afraid. I don't know why. I explained it to my daughter this way: "I think God is hiding from me how deep the bottom of this well really was. I can imagine getting to the top and looking down and thinking, 'Wow. That is far to fall.'" But for now, I don't see it, at least not most of the time.

That I knew. There was still a lot I didn't know. What my director said was as helpful as it was surprising. She said, "Your toenails are painted." She said, "I don't know who painted them [a friend who, when I said I didn't know how I would reach to cut my toenails, drove to her house for clippers and nail polish], and I don't care. You could be laying on the couch in the fetal position, but your toenails are painted. Red."

Then I understood a little bit, because there is one choice I have made. I've chosen to say, Yes. Yes to gifts of expensive blenders and meals and visits and potted plants that I know I'm going to kill, yes to red painted toenails. Yes, God help me, to myositis.

On a shelf in my spiritual director's home, just across from where I sat, is a beautiful wood-painted icon of the Annunciation. As the angel comes to Mary, looking quite earnest, Mary looks frankly horrified. She seems to be saying, "You want me to do what?" I have spent a fair amount of time in prayer these past several months suggesting to God that, while I'd like to trust His good will, I rather question His sound judgment. This is the plan?

And so it is. Not that I believe for an instant that God wills our suffering. I do believe that God uses it all. He's using this.

I want Him to. Please! If I have to spend weeks and months like this, without any physical strength, helpless and dependent, dear Lord in heaven, use it!

Not that I was given a choice about the myositis. It came without advanced announcement or invitation. Honestly, I can imagine having been given a choice and saying yes to this. I'm not dying. The sickness is contained within my body, not in the body of someone else I love. Granted, many, many people, from my husband and children outward in widening ripples are sacrificing a great deal to take care of me right now. It would have been difficult -- probably impossible -- for me willingly to have assented to that. Yet it has come, and to it, I have said, with as much sincerity as I can muster, Yes. I receive you.

Whatever is in this, I don't want to miss it. I know there are treasures to be uncovered amidst the rubble of this mess. Some I have already glimpsed, like this new experience of gratitude. Some I may not realize the value of for years to come. Some I may recognize only when the Kingdom comes. But to all of it, my will and my heart say, Okay, Lord. If we're going to do this thing, let's do it.
So my toenails are red and my walker is wound in purple ribbons like a parade float and I look for what's funny and share it whenever I can. If that's somehow courageous or inspiring, it's all grace. I don't know how to do this any other way.

May 29, 2014

I may have said this already, but I am struck by it increasingly, incrementally, in a widening spiral of awareness. It has to do with gratitude.

I've always known I ought to be grateful. I remember reading a very resonant passage, years ago, about that "ought." I know it in my head. I have so very much -- health, wealth, family, friends. All I could want or need. I ought to be grateful.

But I haven't always been. Instead I've been restless. Disgruntled. Impatient. Worried. Longing for something that I don't have, even when I don't have the slightest idea what that might be. I don't think I'm unique in this. There's this hole inside, and we all want to fill it with something, and we might even know that it's, as they say, "God-shaped," but God is mysterious and invisible and what would it mean for God to fill that hole anyway? So the sense of emptiness, the lack of fulfillment remains, a nagging doubt, an itch that can't be scratched. The ought is mental; the itch is visceral.

As much as I always have to be grateful for, these days I have decidedly more. People are making us meals, cleaning our toilets, weeding our yard, driving me places, loaning us equipment, bringing flowers and chocolates and company. I am grateful. Not ought-to-be, am.

But there's this other sneaky little thing that happens in my head. People come and give and give some more, and my mental accountant wants to keep a tab. She starts tallying up how I can someday repay all of this completely gratuitous generosity. I actually said out loud one day, "I'll never be able to repay all of these gifts." You don't repay gifts. That's not what a gift is, something to be repaid.

And, if there were cause for repayment, I couldn't accomplish it in a dozen lifetimes, let alone one. I could never make these many meals, make adequate return on these many offerings of love. Never.

All I can do is receive.

I made myself a promise as I realized that we were going to need help and lots of it that when people offered, I would say, "Yes. Thank you." Period. I would not pretend not to be in need, when we are so clearly in need. I would not second-guess someone's willingness or sincerity. I would say, yes and thank you and trust that my family and friends are adults and know what they can do and are willing to do and are offering what they want to give. I have said yes to a brand new $350 fancy blender bought with pooled money and delivered in love. I have said yes to a visit from a dear friend who has to take an airplane to get here. Yes.

Then there are the times that, in spite of the many generous offers, I need to ask for the help that I need. This is even more difficult. But I have no choice. It's not virtue, but necessity, so I do it, sometimes through gritted teeth, sometimes through tears, always through too much apologizing. I have to ask for people to come and sit with me so that my 10 year old doesn't have to make my lunch again. I have to ask people to lift me up and down stairs so I can leave the house. I have to ask people to accompany me to the toilet.

Not every job is for everyone, so we're all discerning. I have one friend who can hitch up my underwear and bring me chocolate milkshakes and sit and listen to me cry and make me laugh, but she doesn't do dishes or bring casseroles. That's good, or we'd have too much casserole. On the other hand, by God, we need the casseroles, some of which have been delivered by people whose names I didn't know, people who worship with us, but whom we have never even met.

I sometimes feel grateful to the point of being overwhelmed, teary, speechless, in awe.

But more even than that, there is gratitude that has quietly risen to the surface in tiny, unexpected ways, like soap bubbles, effervescent, fragile. If I weren't moving so slow, I wouldn't be paying enough attention, and I'd miss them. They'd disappear before I saw their fragile surfaces reflecting the light.

It's the gratitude I feel when I look at Green Mountain, near our home, and see how green it is. I'm not out much, so days go by and the season is changing without me, and I notice, like you do when you see a child you haven't been with in a while and say, even though she hears it all the time and is sick of hearing it, "You've gotten so big!" "Green Mountain, you've gotten so green!"

For days and weeks eating was difficult. Meals take more effort than I ever knew -- sitting up, getting a fork to my mouth, swallowing. It was all too much work, and I relied for some time on a lot of blended drinks (hence, the gift of the blender). Now my swallow is improving and I can eat most solid foods again, and I cannot get over how delightful it feels to chew and swallow and feel my stomach fill and remain satisfied for a long time, even on the prednisone, that makes me hungry all the time. I am grateful, soap bubble grateful, for solid food.

I trust that other little miracles will bubble to the surface. The first time I am able to wash my own hair again or get out of bed by myself or climb the stairs or walk the dog or drive the car. I don't want to miss them. I don't want to be moving so fast that the come and go, rise and pop, before I notice them.

May 26, 2014

Today ends my fifth week on prednisone, a synthetic corticosteriod drug invented in the 1950's. I am not a doctor and chemistry was my very worst subject in school, so my understanding of the mechanisms involved is loose, verging on metaphorical. What I know is that this medicine works almost immediately to quell an overactive immune system. It is used to treat allergic reactions and certain cancers, in organ transplant cases, for chronic headaches, heart conditions, and a host of autoimmune disorders, of which myositis is one.

The research on the cause of autoimmunity comes up mostly empty. People, scientists and lay patients alike, have their theories, but no one really knows why, in some people, the body's immune system becomes overwrought and begins to attack the body's own tissues. Manifestations are myriad. Myositis, in its various forms, means that the muscle tissue (myo-) is inflamed (-sitis). In rheumatoid arthritis, it's the joints that suffer. Alopecia areata causes damage to the hair follicles. When the bowel is involved it is called Crohn's disease or ulcerative colitis. Forms of hepatitis and diabetes, celiac and psoriasis are all forms of autoimmune disease. There are eighty or more recognized autoimmune conditions. They affect more women then men, especially women of a certain age, of which I am one.

Autoimmune diseases have no known cure. They are managed with pharmaceuticals. Prednisone is the front-line drug because it is fast-acting and reliable. It comes, part and parcel, with a range of dastardly side effects, so, for most people, taking it is a bit of a pact with the devil. I already have the racing heart (no more coffee for me), occasional (thank goodness) insomnia, and moodiness (my poor family). I am (not) looking forward to the (potential) growth of additional facial hair or the nearly inevitable (at high doses over time) redistribution of body fat from the normal places to the face ("moon face"), and back of the neck ("buffalo hump" -- I kid you not).

When I first visited a rheumatolgist (specialist in inflammatory conditions like mine), I was determined -- no prednisone for me! I left her office with a 20 mg. tapering dose; you never stop prednisone cold turkey, because after a week or two it sends your adrenal glands on vacation, and they need time, on a tapering dose, to remember that they have a job to do. Cortisone is normally made by the adrenal glands, and you need it for important things, like telling your heart to keep beating.

I didn't want the prednisone, because I claim I don't like putting artificial stuff into my body. I imagine myself as Crunchy Granola Girl -- even, I must hypocritically confess, when I have a bag of strawberry Twizzlers in one hand and a Diet Coke in the other. The two tapering doses of the prednisone I ended up taking as my symptoms developed performed as advertised, easing my pain and stiffness while making my heart beat like a big brass drum.

In between those courses, I tried the alternative route: accupuncture and a liver cleanse. My family would tell you that drinking my one to three cleansing shakes a day, sans dairy, soy, gluten, corn, tomatoes, and potatoes made me far moodier than my current 100 daily mg. of prednisone. My Very Special Diet made me moodier than my pain did.

As for the acupuncture, after six or seven sessions, my acupuncturist kindly acknowledged that perhaps her art was not the "modality that best resonated" for me. Needles in my hands and feet and legs and neck and abdomen only made me increasingly anxious with each visit. Meanwhile I was having more trouble climbing the stairs and climbing up on the table to have her use applied kinesiology to test my muscles for allergic sensitivities.

The muscle test I really needed was performed by a neurologist. I love her. I prayed that I might have a doctor both smart and compassionate. I got one. What's more, she's funny and she thinks out loud and it didn't bother her that I walked into her office with my own ideas about what was wrong with me after spending the better part of five months consulting with Dr. Google.

After literally dozens of normal and almost-normal blood tests, the neurologist pulled out her own set of accupuncture-like needles, stuck them in my muscles (in a test called electromyography, or EMG) and was able immediately to tell me that my muscles were not responding to the perfectly normal, healthy (thank heavens) signals from my nerves. A biopsy of a muscle in my right thigh showed inflammation. Hence, the prednisone.

My strength has not returned, not much, not yet. Particularly in the final month on the way down to rock bottom, I experienced a significant amount of muscle decomposition. I now have the neck, shoulders, and cheekbones of a supermodel. My butt is flat and my spine sticks out. More people than you might think have said I look great, which isn't entirely surprising, as I have gone from a size 12 to a size 4. I keep thinking I'll write a diet book and make a million dollars. I may have to leave out some of the less appealing parts, like the yogurt for Easter dinner and the fact that residual flab is not as comfortable to sit on as muscle.

But the prednisone is working. I have noticeably regained muscle control -- that is, even my teenaged son has noticed. And my swallow is markedly better.

I am improving, and, God willing, in time, I will regain my strength and be able to resume some version of normal life -- washing and dressing myself, driving a car, cooking and cleaning, and the like. I am not hopeless -- sometimes frustrated and impatient and ill-tempered, but never hopeless.

It has been almost seven months since this saga began, and I have had a lot to think about. Some of it is as current as my aching tailbone. Some of it is insight that I've been settling into for weeks or months. Some of it is the dim horizon of a future with a chronic condition. As I document it here, I want you, dear reader, to know, while we journey together, I'm healing. And I'm grateful for the prayers that are urging me along.

I hit the bottom right around Easter Sunday. You don't need to know me well to surmise that I don't see that as accidental. I learned some things that day, in my rock-bottom physical state, without knowing that I was at rock bottom, because the turn upward had not yet come. I learned things about resurrection that I hadn't known before. But that's not the word for today.

The day after Easter, in an email to my neurologist, I described my physical function as "approaching absolute zero." That's how it felt, slowing, slowing. Daily, the things I could do were diminishing, illustrated, maybe too graphically, by Easter dinner, which I could not swallow a bite of. I could hardly get the fork from the plate to my own mouth, so my husband fed me a peach yogurt. I was becoming as immovable as stone.

It sounds worse than it was, though I will concede that it looked pretty bad. But on the inside, I felt better than I can easily explain. I did not feel sorry that I could not eat the ham and potatoes. I felt grateful that I could eat the yogurt.

Maybe that's what absolute zero can bring, that sort of acceptance. Maybe rock bottom means exactly that, that we've arrived at the immovable ground. There, at the rocky bottom, my choices were (and are, but we'll get to that another time) limited. I could beat my head against the stone floor. I could pound and scratch. We, the rock and I, could have it out. It's not going anywhere. Neither am I. At rock bottom, in the moment of our arrival there, there's no way out.

A more subtle truth is that, were I really sitting on a floor of stone, I don't have the physical strength to beat or pound or scratch. Maybe that bald fact is what made it easier for me instead to do what I did, which was to sit still and wait.

Come to him, a living stone, rejected by human beings but chosen and precious in the sight of God, and, like living stones, let yourselves be built into a spiritual house to be a holy priesthood to offer spiritual sacrifices acceptable to God through Jesus Christ. For it says in scripture:

"Behold, I am laying a stone in Zion,a cornerstone, chosen and precious,and whoever believes in it shall not be put to shame." (1 Peter 2:4-6)

Living stone. Built into a spiritual house. Chosen and precious. We shall not be put to shame. That sounds so very beautiful. And it bears absolutely no resemblance to the picture in my mind of me, at the bottom of a stone pit. Not living or spiritual or precious. Just damp and dark and grey and cold. More like Joseph's well, deep and open at the top. Like a tomb, only on its side.

Can both of those things be true? Can the stone at rock bottom be cold and grey and precious and alive?

If that were true, we still might not want to live there, but we could build on the foundation. Cold, grey stone is good for that. The wise man builds his house upon the rock.

"The stone which the builders rejected has become the cornerstone" (Psalm 118:22; cf. Matthew 21:42). Those builders' expectations must have been more like mine. Wouldn't it be better to find a stone that's not so rough, one that's not at the bottom of a well? The Master Builder had other ideas.

Now here I am, among the rubble. The Builder is rummaging around, and, evidently, He is going to use me too to build this spiritual house. I've got to tell you, I wonder sometimes at His judgment. As stones go, I'm a pretty ragged specimen. It's going to take a fair amount of mortar to fit my jagged edges into a structure that's going to stand firm. It's not likely to be pretty.

Sitting at Easter dinner being spoon-fed a yogurt is as aggressive a challenge as I can think of to "not being put to shame." But I felt no shame. I felt loved and fed.

May 22, 2014

It's my husband's birthday today. In July we will have been married for 21 years. We both thought we knew everything about everything 21 years ago, so we wrote our own wedding vows. Our vow of mutual hope, "remaining faithfully by your side in good times and in bad," encompassed the traditional "in sickness and in health."

What did we know then of what that might possibly mean? If I could ask the 26 year old woman that I was what she thought, I expect she'd say something about caring for him when he got old, making chicken soup to soothe a cold or even, maybe, sitting with him while he vomited. I was ready to do all those things.

I was not ready for this.

It never occurred to me to think that I'd be the sick one. I don't get sick. Okay, a few years ago I had double pneumonia. I was really sick then. But that's it. "I'm strong as an ox, healthy as a horse." That's who I thought I was. Not sick. Not frail. Not weak. Until now.

"In sickness and in health" has come to mean him taking care of me. I don't mean a pot of chicken soup and or holding my hair back from the toilet. I don't mean a day or two. So far it's been weeks. We have every reason to think that we will eventually be measuring in months.

It starts when I wake up in the morning. I need him to help me get out of bed, go to the bathroom. I need him to shower with me, wash my hair and face and shave under my arms. He helps me get dressed, fixes my breakfast and lifts my arm so I can reach my mouth to take my pills, and so on until he swings my legs back into bed, shifts my weak hips and shoulders and collapses into bed himself. Every day.

I can hardly type the words because I am so utterly overwhelmed by his generosity and my helplessness and my gratitude and his faithfulness. In sickness and in health.

Marriage is a hot topic in the news -- who can marry whom, what defines marriage, whether marriage as an institution is still relevant. What I know is that, those many years ago when we made this commitment, we saw ourselves as committing not simply to one another, but to something outside of and bigger than the two of us, that is, the marriage itself. We knew, however dimly, that there might come a time when it wouldn't be enough for me to be pledged to him or him to me. People change. Feelings wax and wane. Times get tough. People get sick.

It's that commitment that allows him to serve me without word of complaint or self-pity. It allows me to be served without being overcome by guilt and regret. It is the essence of marital love.

"Love is patient, love is kind..." So begins the great hymn to love from 1 Corinthians, chapter 13. Again, because we knew everything and wanted to reinvent the world when we were planning our wedding, we passed on this passage thinking it clichéd. Now I see that it is simplicity itself.

Love is patient, love is kind. It is not jealous, love is not pompous, it is not inflated, it is not rude, it does not seek its own interests, it is not quick-tempered, it does not brood over injury, it does not rejoice over wrongdoing but rejoices with the truth. It bears all things, believes all things, hopes all things, endures all things. (1 Corinthians 13:4-7)

"Love never fails," concludes verse 8. In sickness or in health. That's how we recognize it as love.

May 19, 2014

I have questioned deeply, loudly, with tears and anguish and anger why bad things happen to good people. Kids with cancer? Wrong. Abuse, neglect? Wrong. Poverty, war, injustice, hunger? Wrong, wrong, wrong. I have not, however, questioned why a bad thing has happened to me.

It's bad, what's happened to my muscles. It's bad that I have a weird, rare disease. But from the beginning I haven't much felt compelled to ask why or, worse, why me? Why not me?

Stuff happens. It happens to everybody. I tell my kids frequently and whenever they take to complaining about someone else's bad or irritating behavior, that we don't know what cross another person is carrying. But be assured that every person you meet is carrying one.

Most of our burdens are invisible. I have had the privilege in work and ministry and life of being entrusted with many people's personal, intimate stories. I have sat with women and men who look like they have it all and have it all together and heard from them stories that crush my heart. I know stories of the deaths of children and of parents and of marriages. I know stories of the theft of innocence and safety and the promise of childhood. I have seen and heard the lies and fear and shame and rage and seemingly bottomless wells of grief.

Everyone has a burden. Why shouldn't I?

As a Christian, I subscribe to a worldview that says that God's image is most accurately reflected by a man stripped naked, nailed to a wooden cross as a criminal, and left to die of exposure and suffocation. That is the human suffering that stands at the center of what we can know about an infinite, mysterious God. This God has identified Himself with human suffering completely. Jesus says, "Whoever has seen me has seen the Father," (John 14:9).

What if it is true that it is in our darkest darkness that we, you and I, best reflect the image and likeness of God? That is what humans were created to do, bear God's image (see Genesis 1:27). What if when people see our suffering, they truly see the face of God?

But that isn't the whole story. If the story of Jesus ended with the cross we wouldn't still be telling it. Plenty of would-be Messiahs died on Roman crosses, bearing the burden of their humanity. For Jesus, The Human, The God-Image Bearer, the weight of suffering was and is outweighed by the transforming power of Love.

Love is the source of creation...of incarnation...of the road to the cross. We need not mistake God as the source of our suffering. Suffering is the product of a world broken by sin, mine and yours and everybody's. God, rather is the source of the love that invades that suffering and turns it into something completely unexpected -- joy.

I know that doesn't make any sense, but it's true all the same. We can look on the brokenness of our bodies and souls, pried from our crosses, laid in the cold darkness of tombs, and wonder how a good God can allow such awfulness to happen to us or to happen to anyone. But if we keep listening to the story, we see that the darkness can't keep out the light. The stone and the seal aren't strong enough to hold, not when Love is behind the whole unfolding drama.

Joy breaks through. Fresh air floods in. Grave clothes are thrown off and replaced by robes of light.

In my life, as I sit in this chair, I receive daily little resurrection gifts -- a meal, a potted rose, someone to hold up my arm so I can comb my hair. Where do they come from? From Love. Why do I need them? Because I have a burden, a cross to bear. I don't have one without the other.

May 17, 2014

Back in December I wrote about being sick with something, something virusy -- or not -- painful, curious, concerning, unknown. Back then I made a superstitious promise to myself that I wouldn't write any more about it, that it didn't make sense to write any more, until and unless what I had or have had a name. But because whatever it is has continued to consume my thoughts over weeks and months, I've been resigned to writing nothing at all.

It still feels as if it would be easier if it had a name. There are candidates: myositis or polymyositis; fasciitis; inflammatory myopathy. I wonder if it matters. For now, 100 daily mg. of prednisone says it doesn't. We've narrowed it down, started to treat it. It. Me.

I don't know how to talk about what's happened to my body without its feeling like a string of complaints. Does it help if I first acknowledge that, maybe beyond reason, I don't really feel sorry for myself? I don't wonder why this is happening. Things, trials, struggles, happen to everyone. This is mine. And my family's and friends', because they have to fill in the gaps that have opened in our lives as I sit on the couch.

Maybe it's better to start with what I can do. I can walk. I can feel; this is a muscle problem, not a nerve problem. I can think and type and talk. I will live, maybe not into my 90's, but what were the odds of that anyway?

But there are many, many things that I cannot do. I can't get in and out of bed or the car. I can't drive. I can swallow only with difficulty. I can't sing the high notes, because my diaphragm is so weak. Mostly I can't lift my legs from the hip or my arms from the shoulder. That encompasses a lot of things I can't do. I need help with showering and dressing and lifting a glass of water to my mouth. I am using a walker, mostly because my weak neck makes me feel unsteady and off balance, and I do not want to risk a fall.

People who see me know this is happening. The people who live with me know that I am a little, teeny, bit better since I started on the prednisone -- I can reach a little further, control my muscles a little better. But I'm not stronger, not yet. I've lost a lot of muscle mass, because my immune system decided that my muscle tissue was the enemy. Muscle doesn't regenerate on its own or over night.

I think we imagined a different timeline, one in which I would start taking these powerful drugs and start getting better, back to normal. Instead, as I begin to add to my network of friends others people living with muscle disease and hear their stories, I realize that this is going to be a long road; as one wise new friend frequently reminds me, this is a marathon, not a sprint, and my training has just begun. My exercise regime, prescribed by my physical therapist, is done lying on the bed, because I can't lift my arms against gravity. I exercise my hips by practicing rolling over in bed without help. This could take a while.

And it, whatever it is, is chronic. Some people recover more or less completely. They achieve remission, on or off medication -- steroids, immunosuppressants. So back to normal is relative. I won't be the same.

I'm not the same. And I am. And I honestly don't quite know yet what that means. The questions that have pervaded my thinking since this season began are Who am I? and Who is God? I thought I knew. I did. I was wrong. My self-image was not comprehensive enough to make sense of a me who is effectively disabled and will be for the near future. My image of God was not big enough to encompass life with chronic inflammatory muscle disease, disability that leaves me utterly dependent on the kindness of others for my most basic needs. But it should have been.

What I thought was that I knew us, God and me. I was mistaken. Without even being aware of my arrogance and ignorance, I thought I had moved beyond mystery. I've done my emotional work. I pray. I got this.

Now I am plunged into deeper depths of mystery. I have utter confidence that God will bring from this trial blessings for me and for others. But the road is not an easy one, for me or for others. It's a lot to process, and I've just begun.

Many people around me have been urging me to write through, so here I am, even though I still wonder if I really know what to say. Maybe we can discover together new paths forward. If you're game, I'll be here. Check this space.